Bulletin Board Policy and Advertising


Posted by Webmaster , Mar 21,2002,21:39   Archive
The bulletin board policy states:

"From time to time patients will report some success with one of the alternative approaches, but no pattern has developed through the years of any one method permanently helping a number of patients. The Foundation does not discourage patient experimentation and is always interested to hear of promising methods of treatment."

AND

"It is our policy on our web site to not allow advertising of proprietary products or services. There is a definite danger of desperate and vulnerable patients being victimized by either well meaning or unscrupulous purveyors of unproved or ineffective claimed treatments or cures."

The moderators make separate judgement calls on each instance of what might fall under the category of advertising. A newcomer to the bulletin board touting a product known to be part of a multi-level marketing scheme is an easy call. Other cases are not as clear cut. In addition, the moderators don't necessarily read every message on the bulletin board every day so some things may slip through.

Dee's message stating that she had found HydroEye to be beneficial for dry eye was not deleted. What was deleted was the link to the manufacturer. Search engine ranking depends very heavily on links from other sites. Links from sites which are themselves linked to by many other sites (as our site is) add further ranking weight. Pages from our bulletin board can be found in Google so a page from our site containing a link to the manufacturer would increase the company's visibility on the Web and thus we would, in effect, be advertising their product. Persons who wish to purchase HydroEye can contact Dee for the address. In general, we believe that addresses for products which haven't undergone efficacy and safety testing should not be posted on our site.

For what it is worth, this why I would not use HydroEye myself:


  1. The product has not gone through the rigorous testing required by FDA (efficacy, safety and interaction with other drugs)

  2. The company claims HydroEye is "manufactured to the highest quality standards" but that is belied by the fact that they do not display the U.S. Pharmacopoeia (USP) notation (which are the highest standards)

  3. The company refers to its products as neutraceuticals which is a term used to imply pharmaceutical properties when they can not by law use the latter term.

  4. The company has already received a warning letter from FDA about labelling which was false and misleading FDA letter as PDF

  5. The company has a long disclaimer page (accessed from a tiny link on its home page). Among other things, the company claims that it will not be liable for more than the purchase price of their product even in the event of negligence, malpractice or fraud.

  6. If it walks like a duck and quacks like a duck, it is not surprising that it drew the attention of QuackWatch

  7. Every other week another horror story emerges about problems with a herbal remedy or neutraceutical which is a direct result of lack of safety testing, drug interaction testing or quality control (lead in echinacea, ephedra killing people..). Like many others on this bulletin board, I take a number of registered drugs. There can be enough problems with known drug interactions without making a witch's brew by throwing an unknown agent into the pot. Make no mistake about it - if ingesting HydroEye does affect your tear film, it has to do so by affecting your metabolism and, if it does that, it could interact negatively with other drugs - not to mention have, so far unnoticed, adverse side effects. If five years from now you need a liver transplant because of HydroEye, the company will refund your $29.

Bob whose biochemistry background makes him wary




Recommend Current pageAuthor Profile
Replies to this message


Re: Bulletin Board Policy and Advertising

Re : Bulletin Board Policy and Advertising --- Webmaster
Posted by Shirley-Arkansas-USA , Mar 21,2002,22:44 Top of Thread Archive
Thanks Bob for the indepth explanation. Hopefully it will offer others some insight into the reasons for the policy and get the point across that we can still talk about whatever we choose to try.

Shirley Barr




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Bulletin Board Policy and Advertising

Re : Bulletin Board Policy and Advertising --- Webmaster
Posted by Dee in OR , Mar 21,2002,23:30 Top of Thread Archive
I still don't understand why NONE of the links and posts with the address for FL41 were not deleted. Has FL41 been FDA approved? Has it been scientifically proven to do what knighton optical says it does? And after taking modern, traditional medications for 5 years, I needed brain implants and NOBODY refunded my money or even took responsibility. Tylenol can cause liver damage. And you stated "The product has not gone through the rigorous testing required by FDA (efficacy, safety and interaction with other drugs)" Maybe not, but ALL the medications that cause dystonia have, and gee, if it's FDA approved, then it must be safe and have no adverse interactions with other drugs. I'll sleep well tonight knowing that the FDA is looking out for my wellbeing and rigorously testing and APPROVING all those drugs that cause dystonia!

Check out the post entitled "I'm not crazy..it was the Zoloft!" on the dystonia BB.


Dee whose medication induced tardive dystonia from FDA approved drugs makes me wary

--modified by Dee in OR at Thu, Mar 21, 2002, 23:42:59

--modified by Dee in OR at Fri, Mar 22, 2002, 00:49:04




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Bulletin Board Policy and Advertising/Bob

Re : Bulletin Board Policy and Advertising --- Webmaster
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), Mar 22,2002,06:26 Top of Thread Archive
Wow!! Bob could you please post more often. I was told not to take it by my pharmacist because it contained magnesium sulfate and that would interfere with the mag supplement I am already taking.



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Bulletin Board Policy and Advertising

Re : Bulletin Board Policy and Advertising --- Webmaster
Posted by June in Toronto (June Floyd,June in Toronto), Mar 22,2002,06:54 Top of Thread Archive
Thanks, Bob, for taking the time to tell us `how it is'. We appreciate all the work you do on our behalf.

June in Toronto (beb/meige)




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Bulletin Board Policy and Advertising

Re : Bulletin Board Policy and Advertising --- Webmaster
Posted by Kelly Saffell , Mar 22,2002,07:04 Top of Thread Archive
Thanks Bob for taking the time to provide such an informative post. We appreciate the job that you do. Now, lets get back to business - SUPPORT!
Kelly in Dallas



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Bulletin Board Policy and Advertising

Re : Bulletin Board Policy and Advertising --- Webmaster
Posted by Dee in OR , Mar 22,2002,10:29 Top of Thread Archive
No one has answered my question about FL41. And the BEBRF even passed out flyers at their conference concerning FL41. Their link was posted all over this BB and their address, phone number and contact person.

The warning letter that Bob is referring to was NOT for HydroEye, but for another product!

The label on HydroEye states "This product is not intended to diagnose, treat, cure or prevent any disease."

I have never heard of any vitamin supplement that is FDA approved. Why? MONEY! Do any of your supplements have the sacred U.S. Pharmacopoeia (USP) notation?

FDA approved the diet drugs Fen-Phen and then took one off the market AFTER the damage had already been done and law suits filed. The FDA aproves drugs like they were candy because they get paid BIG BUCKS by the drug companies. There are benefits and consequences to everything you take. How can the FDA approve drugs that they know cause irreversible damage to people. Whose interests are they really looking out for? Obviously NOT yours and mine!

Have you ever read or listened to all the disclaiamers from drug companies on their FDA approved drugs? Have you ever heard of any that took responsibility for causing irreversible damage to a human being?

This narrow minded attitude just enables the big drug companies and the FDA to keep doing what they are doing - producing medications that may be more dangerous than what they are made to treat. You are scarier than the drug companies!

I posted the link at the request of some open minded individuals.

I guess some people are just blind followers. Vulnerable, desperate people.

Dee in OR, a proud member of QuackWatch

--modified by Dee in OR at Fri, Mar 22, 2002, 10:45:09




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Bulletin Board Policy and Advertising

Re : Re: Bulletin Board Policy and Advertising --- Dee in OR
Posted by jeff , Mar 22,2002,10:41 Top of Thread Archive
I did a search on this BB looking for FL41. I can't find any post advertising it, or linking to a manufacturer's site. I see no problem with posts discussing a product, only those advertising it.



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Bulletin Board Policy and Advertising

Re : Re: Bulletin Board Policy and Advertising --- jeff
Posted by Dee in OR , Mar 22,2002,10:46 Top of Thread Archive
Yes Jeff,

Isn't that interesting? I did a search too and came up with NOTHING. And I know there were messages with links because I posted them and so did others. So where did they all go?

Dee in OR, a proud member of QuackWatch - GO DUCKS!!

--modified by Dee in OR at Fri, Mar 22, 2002, 11:23:02




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Bulletin Board Policy and Advertising

Re : Re: Bulletin Board Policy and Advertising --- Dee in OR
Posted by June in Toronto (June Floyd,June in Toronto), Mar 22,2002,15:27 Top of Thread Archive
Two drugs that my hubby has been told to take for Peripheral Neuropathy and LDL Cholesterol - both drugs can cause PN. I just found out about LIPITOR yesterday, the other drug AMITRIPTYLINE can also cause PN, but he is taking such a low dose the doctor said that `it won't hurt him'. However, a combination of the two drugs can I'm sure - I have to check this out more thoroughly.

Re :FL41's - I wonder if info. of that was ok to hand out/post as its not taken internally and doesn't fit in the same category as drugs?

June in Toronto

--modified by June in Toronto at Sat, Mar 23, 2002, 10:49:34




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Bulletin Board Policy and Advertising/June

Re : Re: Bulletin Board Policy and Advertising --- June in Toronto
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), Mar 23,2002,07:03 Top of Thread Archive
THAT is exactly what I was going to post, june. Fl41's are supposed to be a non drug way of controlling light sensitivity, and obviously you don't ingest eyeglasses. The important thing on this nutrient issue are the individual ones and the form they are in. I wish Bob would post further on what he was trying to say. Does he know something about certain nutrients that we don't know?



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Bulletin Board Policy and Advertising/bob

Re : Bulletin Board Policy and Advertising --- Webmaster
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), Mar 22,2002,17:34 Top of Thread Archive
Well i can see you've stirred up quite a brouhaha yourself. Are you saying the lead for example in echinacea comes from the soil it is grown in? It is a native american plant and i thought a perrenial, which is why i grew some in my garden, and it also dries well. It did not come back however, i think it was plagued by something that ate it's leaves and also the petals of the flower itself. OR are you referring to the way it is processed?



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Bulletin Board Policy and Advertising/bob

Re : Re: Bulletin Board Policy and Advertising/bob --- Kathy in Atlanta
Posted by Bob Campbell , Mar 23,2002,15:52 Top of Thread Archive
Sorry about that. It was not echinacea products which had been found to have high lead levels but gingko and hai ge fen and some other unspecified herbal supplements. The lead content probably was a consequence of the plants growing in soil with high levels of lead because some plants concentrate heavy metals. The point was that the lack of requirements for manufacturing quality control and the fact that the supplements are crude extracts allowed such contaminated products to get on the market. For this reason, experts recommend that you purchase supplements from the larger manufacturers as they generally have better quality control.



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Bulletin Board Policy and Advertising/bob

Re : Re: Bulletin Board Policy and Advertising/bob --- Bob Campbell
Posted by June in Toronto (June Floyd,June in Toronto), Mar 24,2002,07:28 Top of Thread Archive
Thanks for the good link Bob.

June in Toronto




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Link

Re : Re: Bulletin Board Policy and Advertising/bob --- June in Toronto
Posted by Shirley-Arkansas-USA , Mar 24,2002,10:08 Top of Thread Archive
I thought that it was a good site too, June and I signed up for their email newsletter.
Shirley in Arkansas



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
FDA approval - are you sure you want it?

Re : Bulletin Board Policy and Advertising --- Webmaster
Posted by Shanasy in IL , Mar 23,2002,00:05 Top of Thread Archive
It scares me how duped the public has been into believeing that "FDA Approval" means something is actually "safe". This couldn't be further from the truth! However you won't read these truths in the paper or magazines (since the pharmaceutical companies pay alot of money for ads and thus highly influence the remaining content). However you can find these facts in JAMA (Journal of American Medical Association). (Gee...there's a paradox!!!!)

For those of you that shy away from anything NOT "FDA approved" consider these facts:

The mainstream media regularly reports on the "dangers" of "unproven" herbal remedies and supplements. But what is the reported number of people who have died from using herbs and supplements? According to the FDA, between 1993 and 1998, federal, state and local agencies reported a total of 184 deaths, MOST of which were associated with weight loss formulas. Compare THAT to the reported number of people who die in hospitals because of the side effects of "properly prescribed" pharmaceutical drugs: more than 100,000, every year. You can add to that the number of patients killed in hospitals because of "medical errors": another 100,000 or so. Those statistics are from the Journal of the American Medical Association (JAMA). This means that the ordained guardians of our health kill as many people every week as died in the September 11 terrorist attacks.

Every year thousands of new drugs are brought on to the market. Every year hundreds of new drugs are "quietly" taken OFF the market due to dangerous side effects (too late!). ALL originally "FDA approved".

A 1998 JAMA article estimated that more than 2 MILLION people require hospitalization every year because of the adverse side effects of drugs (FDA approved!). Moreover, it is widely conceded that the number of adverse reactions and fatalities attributable to prescription drugs is actually many times the number reported.

Adverse drugs (FDA approved!) effects now rank among the TOP 10 causes of hospitalization and are held accoutable for as many as 50 MILLION hospital patient days a year!

Interesting fact: Did you know that a drug manufacturer needs to submit only two studies showing satisfactory results to get a drug approved by the FDA EVEN IF there are even MORE studies showing the drug causes adverse reactions in an unacceptably high number of cases?

I could go on but I won't as I know some of you want to get off this subject and move on to something more "positive". However I don't think this info should be kept under a shroud of lies or misinformation anymore. Of all people that should be warned - I think it should be those who are "desparately" seeking help for what is called "incurable" and willing to try almost any drug "FDA approved"

Still insist on "FDA approval"? Hellllooooooo????

--modified by Shanasy in IL at Sat, Mar 23, 2002, 00:13:54

--modified by Shanasy in IL at Sat, Mar 23, 2002, 00:15:35




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
The power of belief

Re : FDA approval - are you sure you want it? --- Shanasy in IL
Posted by Delaine Inman , Mar 23,2002,12:01 Top of Thread Archive
Thanks Shanasy for what Paul Harvey would say is, "The rest of the story". I was aware of everything you said. That is why I got involved in holistic nursing years ago. I still use traditional medicine (out of desperation sometimes) and will continue to try alternative and herbal rememdies to try to get my body back into balance so that I can be as healthy as possible and work on the cause and cure rather than just treat the symptoms. Both sides of the coin need to be known so we can make informed decisions based on the facts and what is best for us. The power of belief is the most powerful force we have on our side. The power of prayer, the power of believing in the healthcare provider and the power of believing in the treatments and medicine we take will work for us; all these things enter into the equation of how we each follow the path we feel is right for us. The ideal for me would be a holistic/traditionally educated MD who has studied both Western and other ancient medicine. I've run into a few. They are rare, but more and more are looking at the facts Shanasy just stated and like myself have said "there has to be a better way than this". If the two can merge you have more to offer and more options to consider. A lot of good research is being done because of Doctors like Andrew Weil, Deepak Chopra, Herbert Bensen, Dean Ornish, Christine Northrup, Dr. Oz (can't remember first name) and many, many more throughout this country. They are all well respected and are helping change traditional medicine for the better. Yes make sure anything you try comes from a good company or person you trust, but don't close your mind to non-FDA approved products when the FDA ones can also be and have been more harmful to many. I'm going to continue to use both if they work for me and I'll continue to try both.

--modified by Delaine Inman at Sat, Mar 23, 2002, 12:08:46




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: The power of belief

Re : The power of belief --- Delaine Inman
Posted by June in Toronto (June Floyd,June in Toronto), Mar 23,2002,12:58 Top of Thread Archive
I agree with both Shanasy and Delaine and I use holistic medicine rather than `the others' whenever I can - there are just too many side effects with them. One thing seems to be missing though with the statistical analysis that Shanasy provided. How many people took alternative drugs where 184 people died - that information is not provided? You must remember I am married to a scientist and he requires millions of years and millions of subjects (exagerated!) before anything is even partly considered proven. I'm sure the FDA at least TRY and make sure that new drugs have at least gone through similar time and numbers of testing. Scientists argue that alternative medicine just hasn't gone through that! Just an opinion to add to the list for discussion.

June in Toronto who takes Bilberry and other alternative medicines.




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: FDA approval - are you sure you want it?

Re : FDA approval - are you sure you want it? --- Shanasy in IL
Posted by Alan Phair , Mar 23,2002,21:32 Top of Thread Archive
Shanasy, sorry but your story is so far off base that I wouldn't even begin to comment on it. I have seen through the process of getting a drug approved by the FDA and it is not an easy thing to get done. In fact, that is one of the problems in most peoples minds. The thought is that the FDA is too thorough and should be more like Europe and release drugs with less scrutiny.

Of course almost anything has an adverse reaction and the key is knowing what that is and avoiding the situation that causes it. Ever here of package inserts? Fortunately today, with the advent of computer systems, pharmacies can now print out the adverse reactions and at least give you a sheet of paper listing the major ones. The problem is that many people ignore them. I may have mentioned this before but the actual drug that has the most interactions if you run it through a computer will be aspirin. Do you suggest that we should take that off the market?

Anyway, everyone knows that this is a sore topic with me and it is probably because I am so close to it. Most drugs take many many years before they can get approval from the fDA so please don't make it sound like it is a simple process.....Alan




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: FDA approval - are you sure you want it?

Re : Re: FDA approval - are you sure you want it? --- Alan Phair
Posted by Delaine Inman , Mar 23,2002,22:45 Top of Thread Archive
Alan you sound like you might have worked for a drug company or something connected to the FDA. Did you? I know many drugs take forever to get approved, but it seems there is not consistency and some drugs slip through pretty fast. Why? I'm no expert, but you have to admit many get pulled off the market and we hear horror stories about the evidence not to approve was somehow lost in the process. The quotes Shanasy gave from JAMA are true and as a nurse I have read these studies in both the American Journal of Nursing and at holistic nursing forums. Hospitals save a lot of people, but hospital mistakes, drug reactions, and infections are a huge problem and always have been. So I don't think you can totally discount her point. Everybody has passionate points of view and like religion and politics we are not all going to agree on every issue. We do need to respect the other person's point of view and beliefs and still get along by agreeing we disagree on many things, but have a common goal to support each other. I wish our tone of "voice" could be kinder and less sarcastic from both sides.



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: FDA approval - are you sure you want it?

Re : Re: FDA approval - are you sure you want it? --- Delaine Inman
Posted by Alan Phair , Mar 24,2002,16:42 Top of Thread Archive
Amen.



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Bulletin Board Policy and Advertising

Re : Bulletin Board Policy and Advertising --- Webmaster
Posted by Dee in OR , Mar 23,2002,01:34 Top of Thread Archive
Shanasy,

Very interesting information! I think you definitely qualify to be a member of QuackWatch! Quack, quack!

Dee in OR - GO DUCKS!




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile